Applauding myself and keeping going with a smile on my (red) face in spite of it all!

I’m jumping back in where I am, and trying not to get bogged down by trying to fill in the gaps. This post will be part explanation and part celebration.

Why the celebration? Don’t get too excited, this won’t be the average person’s idea of celebration. This is a #spoonie celebration, that’s celebrating every achievement when times are difficult due to chronic illness to remind yourself that you’re a legend … 😀 ! This is particularly important to me because I have so little in the way of support, still waiting on social services – less said about that the better right now, and keeping going on your own in the face of so much can be very very tough. This is like being my own ‘cheerleader’ 🙂 .

I was woken by the phone just before 9am today. I felt dreadful. My night was a bit of blur but I remembered that it had been marked by nightmares and night sweats. I spent a lot of time going to and fro the loo, thanks to a bad bowel flare. I also felt nauseous and clammy, and the fatigue that has particularly plagued me recently was still present. Thankfully it wasn’t so bad as yesterday when I had to go back to bed at lunchtime because I couldn’t stay awake and kept falling over, but this morning five minutes or so of activity warranted rest afterwards.

I’ve just realised that my face is showing signs of that horrible flare up again, the one that happened several times a few weeks ago. At its worst my face ballooned and I could barely open my eyes. Earlier today I thought something didn’t look quite right when I glanced in the mirror but couldn’t pinpoint anything specific. Now it’s looking increasingly red, particularly around my eyes and mouth, as before, and under my chin, and it has begun to itch … *dashes off to take an anti-histamine*.

I do generally feel like a I’m in a ‘flare’ of some sort. I ache, I’m lurching between insomnia and the most crushing fatigue, I have too little energy (hence no treadmill tales of late – I’m desperate to run but at the moment have no capacity to do so) and my digestive disorder (Bile Acid Malabsorption) is seemingly flaring unexpectedly and very badly. There’s also the nausea, hot flushes, clamminess and night sweats, and I’ve been experiencing violent mood swings lately, not at all like me, resulting in sudden and very severe depressions. I lost six days to one last week, things got very desperate and I became actively suicidal at its peak. I’ll cover that a little more in a separate post. I strongly suspect at least some of the symptoms to be due to a hormonal issue, likely a particularly impactful perimenopause, but I don’t know if that’s true of all of them. I would like to know what’s going on and I’d certainly like to feel better. All recent blood tests apparently indicated that all is well …

I’m conscious of not wanting to make this a long post, and of the need to take off my make up and apply some of the dreaded steroid cream since my face has begun to flare again. I have no idea what is behind these flares, but still suspect something systemic. I wasn’t wearing any make up at the time of the original incidences of this, and today I’m wearing minimal make up, nothing new, that I’ve worn a lot recently without incident.

Today’s achievements

  • Shower/Dress
  • Meds
  • Therapy session
  • Too nauseous to eat breakfast but made a lovely post-therapy brunch
  • Answered the phone twice – first a wrong number, a lot of people seem to think that I am a fancy hotel in a neighbouring district (!), second time it was the tradesperson who’d arrived to carry out annual safety checks for my landlord but then couldn’t work out which entry buzzer was the one for my flat, so rang to be allowed in!
  • Created a new label for my buzzer on the door entry panel, to replace the previous one which had worn off, and stuck it firmly in place when I went down to take out my rubbish
  • Started an online art therapy course – completing the first six lectures
  • Did a lot of work in my bullet journal
  • Dealt with my pharmacy delivery – ‘Pharmacy Bob’ was as lovely as ever.
  • Emptied and refilled the dishwasher
  • Put on a load of laundry – phew, looks like I just escaped having to start going commando … !
  • Booked a cab to get me from a physiotherapy to a dental appointment on Friday. The physio is squeezing me in, it’s the only space she had, but it leaves me with just 10mins to get to my appointment at the dentist – hence the cab and a need for me to shout, ‘Step on the gas, my man!’ (not really 🙂 )

Still to do

  • Report leaking dishwasher
  • Hang laundry
  • Make this recipe – hopefully it will be a bit of a treat
  • Evening Routine

 

Heart REset on living + SEVEN WEEKS

I think it feels as though more time has passed since that wondrous day following that fateful post. Certainly a LOT has happened.

I have always prided myself on capitalising on both hope and opportunity and I hope that this is evident.

I posted an update 14 days after my friend’s visit and I went on to post, on the 26th June, about the BIG PLAN that I was formulating and putting into action. I called it Operation Thrive. Here it is as it stood then, at that point all Priority 1 tasks were already complete or underway:

As at today, all Priority 2 tasks are now either complete or underway … yay! I have also taken a couple of tentative steps towards actioning some Priority 3 tasks.

I have had no further support since my friend’s unexpected intervention on the 10th June, except for the monthly visit of the woman I pay to help with cleaning tasks. I had three relatively good weeks then had three very challenging weeks due to a number of stressful events and by the end of the week before last was again struggling with suicidal feelings partly because I was overloaded and lacking support, but also because of the apparent impact of perimenopausal issues on my mood (I’ll cover this in a separate post). However, I managed to hold on and pulled through. Last week was altogether better and had a moment of real high! I’ll cover that in a separate post.

Priority 1:

  • I am writing most days – if not here, then in my journal. I haven’t done any work on my novel project recently but still without support my capacity is much reduced and there’s only so much that I can do. I am doing as much as I possibly can.
  • I have felt much less lonely overall, although I am aware that I am still largely isolated. In the seven weeks since my friend’s intervention, I’ve had one other visit from a friend and maybe five phone chats. I have taken the initiative and I am connecting much more with friends (almost all of whom live at a distance) via social networks. I post daily updates. I reach out when I need support and usually receive comments with virtual (((hugs))). Sometimes someone will chat via a messaging app. I am keeping in touch and not allowing myself to withdraw. One friend hopes to visit in September/October which would be lovely. Today has been difficult. I reached out specifically asking for contact yesterday and today, but there hasn’t been anyone around for anything more than a virtual (((hug))) or wave. When loneliness creeps in it does make things harder, but I keep busy and distracted as much as my ‘spoonieness’ will allow. At the worst moments I hunker down for a while. My calendar is as full as I can sensibly make it for the coming month. Perhaps by the end of the month or the start of the next, we can hope, social care support will finally be in place to pick up the slack, allowing me more freedom to get and out and build more of a life, and giving me regular twice weekly contact at home.
  • Rarely are two days the same so daily routines do vary but are generally good now. I’ve only failed to shower on a handful of very difficult days. I am mostly on top of chores – but need help to catch up with the mountain of laundry and some cleaning tasks. Luckily, I am very tidy and organised and that helps a lot.
  • Self care has improved steadily in the last seven weeks and exponentially so in the last week following a couple of significant appointments (more in a separate post)
  • My ability to get out and about has also approved steadily and continues to do so. I am  happy with my progress.
  • The routine inspection by my landlord’s agent was successfully carried out some weeks ago. My landlord himself, who lives overseas, will make an annual visit at the end of next month. If support isn’t in place in time, I will no doubt stress and overstretch myself ensuring that the flat is in entirely immaculate order.
  • I’ve been to the GP a couple of times and had the necessary tests. There are ongoing issues, I’ll cover that in a separate post at some point.
  • I am still without support for my eating disorder. However, I have made progress by myself. Progress has been steadyish and, more recently, certainly significant. I hope to join a local branch of OverEaters Anonymous but at the moment I don’t have the ‘spoons’ to attend its evening meetings. Evening outings are only possible if I rest for most of that day and each Tuesday I’ve had other commitments. I’ve recently discovered that Beat, the eating disorder charity, runs an weekly support group online. I’ve registered and I’m waiting for my registration to be processed. I will write a separate post about my weight and eating issues; they warrant it.
  • Psychotherapy/Trauma Therapy – there is a lot to say about that! Suffice to say for now that some significant progress has been made both in terms of provision and with my interim therapist.

I have resumed physiotherapy treatment – again a separate post is warranted. My treadmill routine got derailed by a lack of ‘spoons’ and being so busy elsewhere with appointments but I am determined to restart it on Monday.

I saw my dentist last week, had a fabulous appointment, I will blog about it soon and its relation to my recovery from abuse. I have a further appointment next month.

I’m due to have my eyes tested and get much-needed new specs next week.

I should be making a renewed application for Personal Independence Payments (P.I.P) in the next two weeks.

I have tried to return to a weekly support group for women who’ve experienced mental illness/trauma in the last couple of weeks but was thwarted by my ‘spoon’ count. Third time lucky this week, I hope.

Still without support, it is very difficult to keep all the necessary balls in the air. Some things are working well, while others are not. Some things work well for a time then fall by the wayside because something else has to take priority. The advent of support should see the emergence of some consistency and sustainability … both of which currently feel akin to the fabled gold at the end of the rainbow!

Thank you for reading. I’m sorry that this turned out to be more than a bite-sized post. Either I am just a waffler or there really is masses going on! I actually feel like I’ve written a lot but failed to convey all that is going on. Perhaps because I am tired.

Comments as ever are very welcome and appreciated. Do let me know that you are reading and that I’m not just talking to myself 😀 .

Heart x

 

Generous gifts for Operation Thrive

My ‘fairy godmother’, a Twitter friend, sent me this wonderful journal to help to keep me on track after I wrote this post about my big plan which I named Operation ThriveI was thrilled and very touched. It will be put to good use!

20170707_170732-1

A dear friend and her husband, who I wrote about here, sent me a bumper bundle of art supplies, including a much longed for easel and board, a large sketch pad, a book on figure sketching, art magazines, pencils, paints and a mini wobbly bloke – that’s what I call mine! I have a larger one but this mini chap is great because he’s so portable and fits into my art bag. I could barely contain my glee and my gratitude. Art is an important part of Operation Thrive. At some point I will get around to sharing some art work.

20170727_173719

 

Treadmill Tales: Days 16 and 17

Still under the cosh of this virus, I skipped Day 16, but increased my time by two minutes today, Day 17, instead of by one in order to make up for that.

Time: 14 minutes
I jogged for the first three minutes at a pace of 3.4mph
the walked for the next 10 minutes at a pace of 3.7mph
before I jogged the final minute also at 3.7mph
Total distance: 0.83miles
Calories: 75.2

I’m happy with that but I feel pretty tired now because this virus is walloping me. I’m enjoying the jogging, although the last couple of sessions have been hard because of the added impact of the virus. Walking still feels a bit boring compared to jogging but increasing my pace today helped to keep me engaged.

Tomorrow is a rest day. I start a 15 minute week on Monday, by which time I hope to be through the worst of this virus. It’s frustrating me in its greedy consumption of spoons! I am feeling grotty, fatigued, slowed down and I’m much less productive as a result – which is risky for my mental health – but I am coping so far.

Finding family

I could have applied to be on Long Lost Family with Nicky Campbell and Davina McCall. Instead, after my own extensive search proved fruitless, I turned to the Salvation Army.

The organisation runs a Family Tracing Service and will undertake, what are expensive searches, for a modest fee. From memory, I think I paid £25. I was looking for any surviving siblings of my father. To be frank, I’d have been happy to make contact with ANY relative on my father’s side, as I’d had no contact or knowledge of the paternal side of my family, since my father’s death when I was a child.

My surviving parent forbade me from going to his funeral and told me that from now on his family wanted nothing more to do with me. I was too young to really take it in, but I was devastated all the same. I thought I was at fault.

It was many years before I came to realise that I may have been lied to, as I had been about so very much else. Likewise, after my abuse was finally uncovered, I came to realise that I owed my surviving parent no loyalty.

I was nervous about finding my long lost family. I did fear rejection. I had no idea what they might make of contact from me, after more than three decades. I knew that one sibling had died for certain – the one with whom I had had the most contact. The Salvation Army were able to locate my father’s eldest sibling, who furthermore was happy for me to make contact. So I did, and I found my relative living in an area I’d known well as a young adult. We don’t have much in company, save for our ancestry, but I was able to learn some family history – I knew next to nothing – and I was loaned a HUGE box of family photographs and documents. Eventually, this relative put me onto my father’s other surviving sibling – an uncle – living on the other side of the world. I had been unable to find any record of him myself because I had incorrectly remembered his name, confusing it with that of my Godfather. Finding his contact details was not easy, but eventually by means of a daughter-in-law’s entry on the LinkedIn web site I was able to obtain an email address and I wrote to him. I received a warm and welcoming reply!

For the first time I felt a family connection. This sibling was closest in age to my father and they look similar. They also seemed to share a sense of humour. Looking at photographs gave me an idea of what my father might have looked like had he lived beyond early middle age. From my uncle I learned more about my father’s interests – most of which I happen to share – and he came alive again for me. I warmed to my uncle and liked him very much in his own right. I learned about his emigration journey, his new life and his second wife, my auntie. I so enjoyed our correspondence. This felt like relationship to cherish.

He rang me one Sunday and I chatted both to him and to my aunt for some time, sharing news and history and finding common interests. My aunt loves arts and crafts, as I do, and my uncle was learning to play the ukelele, as I was trying to learn to play the guitar. My aunt told me how delighted her husband had been when I had made contact. There were no recriminations, no hint of rejection, there was just joy.

They came to say that they loved me. I felt uncomfortable, finding myself thinking but you don’t know me and pondering whether this was heartfelt or just something that was said. The reason for this is that I don’t know what it is to be loved by family. I haven’t had that experience. My father may have loved me but our relationship had many complicating factors. My surviving parent was incapable of loving me, perhaps of loving anyone.

It’s not that I don’t welcome being loved by my long lost family. Family love is supposed to be unconditional and a founding fundamental that can be counted on as we grow. I didn’t have that experience and so this is all new to me. I am learning how to be with it.

The trauma and abuse that I experienced, and my continuing recovery from it, has impacted on our developing relationship. The email I had to write describing my father’s violence and the horrors I witnessed as a child was the most difficult. Nor was it easy either trying to explain how his suicide affected me, or how my surviving parent and a sibling had abused me, why it gone on for so long, and the resulting devastation to my life.

Describing my resulting experiences of mental illness, was hard. As I’ve previously written here, I fear being seen as weak. I fear people won’t see the real me. The last three years have been especially difficult, following the breakdown of my marriage, bereavements and further illness. I have not been in touch with my relatives nearly as much as I would’ve liked to have been, either because I haven’t had the capacity or because I haven’t known how to explain. Terminal illness, food banks, the threat of homelessness, bereavement, flashbacks and suicidal ideation have all touched my life in that time. These are not the easiest of topics of discussion.

Despite my nerves, I was determined to complete my search. My often ‘gung ho’ approach served me well here, as I forged ahead. Even if I had been rejected, I knew for certain that I would rather have tried. I didn’t want to be left wondering what if ..? 

I am genuinely thrilled to have found my uncle and aunt. Through them I also have contact details for some cousins in the UK. I had nothing before that in terms of family, everything I have now is huge bonus and I am so grateful for it. I didn’t know if any of my father’s siblings would still be alive. My uncle is, shall we say, a gentleman of advancing years. I’ve felt that time isn’t on our side and I’ve felt guilty about not doing more.

I wrote to my uncle for the first time in a few months just the other day. My aunt swiftly sent a lovely reply, but letting me know that my uncle was in hospital having had to be rushed in for heart surgery. I sensed her obvious worry and wanted him to be at home and well again for her. I felt worried for him and wanted him to be feeling much better soon and be back at home living life with his loved ones.

Inevitably, I also found myself worrying for us.

I don’t pray, I’m a Humanist, but I found myself wishing for more time. Please let us have at least a couple more years, I said aloud, please let us have that. Please let us have more time. It feels like we are just beginning. I am only just finding myself again and still have significant obstacles to overcome on this journey to recovery.

My uncle and I have met just once. I was just a few months old. He sent me a picture of himself holding me in his arms. Our conversation wasn’t up to much that day 😀  . I would love to visit them. I’ve even wildly thought of crowd-funding my airfare. Realistically, health-wise, it would be better for me to wait another year before attempting long haul travel. This all feels a bit ‘pie in the sky’, but who knows what’s around the corner.

My focus is of course on the positives but nonetheless, it is difficult and painful to know that someone wilfully robbed me of this relationship and left me without family for three decades. I had already lost my father in devastating circumstances and they ensured that I lost even more. Sometimes, I feel angry. I know that I have yet to fully heal from this because it’s only now in knowing some of my paternal relatives that I can fully begin to appreciate what I have missed out on. Now as well as celebrating and embracing these new relationships, I also need to grieve.

I’ve never had a happy family dinner or celebration. I’ve never been warmly embraced by a family member. I’ve never known what it was to have a family member feel proud of me or be there for me when I needed somewhere to turn.

I hope, as Operation Thrive continues a pace, that these family relationships can thrive too. Some much time has been lost. We can’t get that back. We can only try to make the most of what we’ve got.

Thank you for reading.

Heart x

P.s. How exciting that I’ve just been able to add the category ‘Family’ to my blog, for this post 🙂 .